In May 2015, I wrote to MyLifeLine followers: I am feeling great. I feel so fortunate to be at this end of things…I am back at work full time and have good mobility and strength in my arms…with each improvement I feel like cancer is a more distant memory. What I didn’t realize at the time was that while cancer treatments end, the cancer fight – and perhaps the fear of recurring as well– changes who you are and what you value. Everyone experiences this differently. For me, having had cancer as a young person further consolidated my perspectives on what matters: social justice and realizing human rights.
As a professor who taught international human rights law and social justice before my diagnosis (and following treatment as well!), my friends and family celebrated that my life was “getting back to normal.” But my life has never returned to “normal,” and I somehow doubt it ever will.
What became very clear to me as I sat in the many waiting rooms was that most people in treatment were scared, lonely, and isolated. Most critically, many didn’t know what treatment options they had and the choices they could – and should – be making in regards to their health. It was shocking to me when I met women facing a breast cancer diagnosis like myself who didn’t know about skin sparing surgical options available to them that might preserve significant parts of their breast (surgeries where the tumor(s) is removed but the skin and possibly the nipples and areolas, are left intact. These surgeries generally involve immediate reconstruction.).
It made me sad and eventually, it made me mad too. Informed consent, after all, means that patients understand what choices they have and make a decision based on the spectrum of options available to them. Although this has been a right in Canada since a decision of the Supreme Court in 1980 (Reibl v. Hughes), from where I sat in those drab waiting rooms, patients were not even aware that they had this right.
Out of this, Be the Choice was born. Be the Choice is a not-for-profit organization lead by survivors, doctors and other dedicated volunteers that is developing software that maps the various treatment decisions that may lie ahead for breast cancer patients. We use the image of a tree to help patients and their loved ones understand what treatments are involved and what sequence of treatments may follow. It’s easy to navigate, sharable, printable and portable. You can check it out here.
After two years of development and many bake sales (nipple cupcakes!), fundraisers (art and wine!), and one grant (thank you Canadian Internet Registration Authority!), we released a beta version of the tool in September. On June 8th we will be launching the first full version of the tool in French and English.
Early users are reporting that this tool makes a huge difference in their experience of diagnosis. One woman wrote that the tool completely changed her treatment trajectory. Another young patient told us that she felt more informed and in control before her biopsy – and that this helped her stay calm throughout the procedure. More testimonials are pouring in.
I could not be more delighted to hear this news and look forward to many more stories such as these. Having breast cancer sucks. But having something constructive and tangible result from that experience is both rewarding and healing. I could not be happier that my life will never be normal again.
P.S. A big thank you to MyLifeLine for being exactly that: a lifeline that connected me to my loved ones while I was deep in the trenches of cancer warfare. My experience of treatment would have been so much harder had the site not been around. Consider Be the Choice a small pay it forward!
By: Prof. Melanie Adrian